Day 5 – Monday, 3 June 2014
Today was the last day of PHI’s 11th International Conference and, as you would imagine, there were a lot of pooped people in the audience – me included! Just sitting around listening to people is so tiring, isn’t it? There were a few individual sessions first thing this morning, but following morning tea through to the Conference conclusion, we were treated to research progress and/or outcomes. These were all presented as a Plenary Session.
My first session began with Lessons from The Rehabilitation Research & Training Centre on Aging with a Physical Disability which did not present with any particular surprises for polio survivors as far as I could determine. However, it was a very thorough piece of research which has now been published and will be honed over the next few years.
The following presentations looked at:
- A Summary from Brazil & South America presented by Dr Sheila Jean McNeill Ingham who runs a rehabilitation clinic in Sao Paulo. What an eye opener that was! She has 3,500 polio patients who range in age from children upwards. The children contracted polio from the oral polio vaccine (Sabin), which was only discontinued in the last few years in favour of the injected polio vaccine (Salk), which is safer, although more difficult to administer. Sheila reported that their clinic does 4-5 polio-related orthopedic surgeries per week. Sao Paulo itself has a population of 20 million, which is only 5 million less than the whole of Australia. They have a very diverse demographic and all the challenges that go along with it. They appear to be doing fantastic work with very limited resources.
- Dr Mark Loeb, Professor, Pathology and Molecular Medicine at McMaster University, spoke about research his team is doing on whether there is a “Genetic Predisposition to Polio: New Research from Canada” which was fascinating, albeit in the very early stages.
- Dr Antonio Toniolo (Italy) has been investigating the poliovirus genome in patients with post-polio syndrome. Results suggest that slow-acting poliovirus can persist in PPS patients (non-contagious). It is hoped that virology methods will facilitate the identification of individuals at risk of PPS and treat them with antivirals to prevent the disease or block its progression. Sounds very interesting and worth keeping an eye on.
- Eric Voorn (The Netherlands) presented on physical therapy recommendations for polio survivors which included endurance training to prevent or reverse deconditioning and preserve muscle endurance for activities of daily living. His session was titled Endurance Training in PPS: How to target intensity? and raised a few eyebrows from many of the polio survivors in the audience who have been hearing about ‘pacing’ and ‘conserving it to preserve it’ over many years. Of course, it still boils down to having a polio-informed physiotherapist who can do thorough muscle testing to ensure endurance training and/or which muscle groups can be worked.
- Carolyn (Kelley) Da Silva, a physiotherapist at the Texas Women’s University, School of Physical Therapy, Institute of Health Sciences Houston, Texas, gave a very interesting overview of a practical research project she has been running to study the effects of whole body vibration on the post-polio body. This project is still ongoing but the outcomes have proved quite positive to date in relation to a decrease in fatigue and pain levels, and better balance. She has designed two protocols, one for people who can stand, and another for those who remain seated. Another good one to keep an eye on.
- The final research project was presented by Dr Claire Kalpakjian from the University of Michigan, who was testing the efficacy of glutathione for improving health outcomes in 19 persons with the late effects of polio. Participants were tested over a 3 month period looking for changes in physical activity, sleep, and self-rated health and wellbeing. At the conclusion of the project, it was determined that there was actually no change in any of these areas as a result of taking glutathione. Well, it is still a result . . .
The Conference closed with a general discussion between members of PHI’s Board of Directors and the audience regarding future needs of polio survivors. The session was designed to enable polio survivors and conference attendees to express their views on what polio survivors need now and in the foreseeable future. As we expect from polio survivors everywhere, there was no shortage of comments and suggestions.
I have provided links below to the full Program Schedule and Session Handouts, and a couple of other interesting papers.
Session Handouts
Statement About Exercise for Polio Survivors
Groce et al - Surviving polio in a post-polio world
Finally, a number of people who were staying another night got together for drinks and dinner at the hotel bar. I got into a lengthy and fascinating discussion with one of the presenters, Marmaduke Loke, an orthotist specialising in working with polio survivors. His business is called Dynamic Bracing Solutions based in Carlsbad, California. That man was definitely passionate about his craft! You can see an interview with a polio survivor he fitted here.
The key thing about this, and all Conferences really, is the discussion that takes place in between the presentations. Even though one of the things mentioned at the ‘future needs of polio survivors’ discussion was the need for more time for polio survivors to be exchanging ideas on how they deal with their condition (not unlike Polio Australia’s Retreats, I’m thinking), this was happening everywhere you looked. As such, I am confident that everyone will leave this Conference feeling like they gained something new and special over the 4 rather exhausting days – although it might take us all a few days to recover enough to process it!
Tomorrow I am looking forward to catching up with Joan Headley, PHI’s Executive Officer, for lunch. No doubt she will be very tired, but she should also be very pleased with her and Brian Tiburzi’s (Joan’s assistant) achievements.
PS: I decided not to take more photos of talking heads today but will see what I get up to tomorrow . . . Sleeping in is looking REALLY good at the moment!